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About brigitam

my son came back negative on all tests. all my doctors (and we have seen LOTS) has said he is not celiac and most don't believe in gluten intolerance. he has been gluten free for almost 2 years and i still doubt myself without the diagnosis. he is not growing (still under 1st percentile) and has frequent tummy problems- because of accidentally having gluten. last week he was sick a lot and i thought, it must be something else, not gluten because i could think how or when he had some. then yesterday i found out that my husband has been giving him a new vitamin c tablet. i checked with the manufacturer and they contain gluten. long story, but the point is.... trust your instincts and doctors don't always know best.

Before discovering my son was celiac i was told he was small due to a "too healthy diet", which is rubbish because he eats all sorts of foods. He has been gluten free for a year and is smaller than my 4 year old even though he is also 6. I have tried a high fat diet, but found it is really easy to get into bad eating habits. I found myself giving him extra serves of ice-cream etc. Its hard because a lot of foods that are high in fat are also high in sugar and salt. I have toned it down now and i just don't think this is healthy for a young child no matter how small they are. My current doctor suggested to put a slice of butter on top of every meal which works because you are raising the calories without increasing the junk.

Thanks so much, some great advice. A lot of things that I hadn't thought of like soap and crumbs around the house. I am going to have to give my house a serious overhaul and hope that solves the problem. I have thought of other food intolerances but it really feels like gluten free is enough of a burden for a 5 year old. I hope that is something that I don't have to explore! Thanks again. I alway appreciate how generous with their time people are on this forum. Brigit.

Hi, I need some help. My son aged 5 has been through lots of testing and I have been told he is NOT celiac- despite having dozens of symptoms. I suspect he had his endoscopy test too soon after being back on gluten- hence a false negative- but who knows?! He has been gluten free for about 8 months and up until now going great- growing, fattening up, increased appetite, better behaviour etc etc. Any exposure to gluten has reconfirmed our suspicions that he needs to be gluten free. Now suddenly we seem to be going backwards. He is pooping his pants again with diarrhoea and bed wetting and having stomach problems. I'm not sure what to do. I have explored all medical and alternative options in the past and been given no answers. Is there a chance that I need to be more careful- using a separate toaster for example? We sometimes buy scoop ice-cream from a place that sells ice-cream containing gluten as well as gluten free. Has anyone else found that they or their children have become more sensitive over time or should I be looking elsewhere for answers? I would really appreciate any insight. Thanks, Brigit.

Hi all, I just thought I'd post an update for anyone who is interested or in a similar situation and searching for answers.. not that I really have any but...
My now 5 year old is very small for his age and has failed to thrive since starting solids. He was born small and had reflux when breastfeeding. He had continual diarrhoea. At 4 it became clear he was not growing like his peers. He had a blood test = negative. He had a endoscopy/ biopsy which was also negative. And allergy blood work= negative. I cried when they told me he was not celiac because it felt like it was the answer. The only thing found was a lot of mucus in the gut and a vitamin d deficiency. And yet he responded really well to a gluten free diet. He started eating, better, less irritable, and stopped bed wetting, etc etc. He has a really well regarded ped who recommended we keep him off wheat only and treat his chronic constipation (which appeared to be constant diarrhoea) with stool softners. He seamed to improve but not completely. So I independently took him off gluten again as well. Instantly, he stopped bedwetting but other than that he was pretty much the same. Until I game him 2 muesli bars the other day to test it out. What I suspected was confirmed. He stopped eating, pooed on the grass because he couldn't make it to the toilet (something he did frequently on gluten) and the next morning vomited everywhere, was continually thirsty (another reaction he has from having wheat/ gluten) and then slept a lot.
It was heartbreaking to be continually told there was nothing wrong with him and for it to be continually implied that I was paranoid for thinking something was wrong. The countless times I heard, "but your not big"... no and I am not underweight and abnormally small either!!
When I was searching for answers a lot of people on this site recommended that I trust my instincts and keep him gluten free. But its hard not to think that the doctor knows best. I am still unsure if he is simply gluten intolerant or celiac but I suppose in the end it really doesn't matter. I would have loved to have had a positive result and not have wasted this past year taking him on and off gluten. I look forward to seeing him grow and fatten and to him no longer being the freakishly small kid at school. Thank you to all who responded to my questions and good luck to anyone reading this searching for answers.

Would you keep her gluten free for a few years and consider testing it when she is old enough to talk about it properly? I am just going through the testing with my son now who is 4. A lot of advice on this forum says trust your instincts and don't worry about the actual diagnosis- especially considering it is difficult to diagnose. I myself wanted to do the tests because I wanted definitive answers but my son kept coming back negative even though he responds well to a gluten free diet. I am not sure it was worth the pain and trauma when I know he is better gluten free anyway. I haven't heard of a test you can do gluten free. If there is one I would have loved to do that.

Thank you mushroom and dixiebell for your wise words. It is silly that I have felt the need for doctors conformation on this. We chose to get the endoscopy done incase other things were found and I guess to rule out any doubt that it was celiac. Now we still have doubt and it feels so cruel that we put my son through it. Boxes make things feel clear and easy but you are so right that nature doesn't do boxes. And today is a new day and day 1 gluten free- again! Cheers.

Ok now I am really confused. We had our endoscopy yesterday.. and the doctor said it all looked good. We still have to wait for the lab results but with negative blood work, it seems pretty clear he is not Celiac. So now I have a 4 1/2 year old who is smaller in height and weight than his 3 year old sister. And you can say size doesn't matter but when you see your son half the size of his classmates it breaks your heart.. I know he has a hard time ahead of him. In addition, I have been keeping a poo- diary and his bowels are a mess. He was a reflux baby. He is low in vit D (not from sun- we live in Australia!) and he responded well to a gluten free diet. I am really at a loss. I will still give the gluten-free diet a 3 month trial but.. I wish I had some answers. I guess the answer is to accept the child you have. I know this sounds weird and maybe offensive to some of you out there suffering, but right now I wish we fit into the Celiac box and then everything would make a bit more sense. Thanks to everyone who posted and helped me out.

I have pushed our endoscopy to next week by going through the private system. I didn't want to risk him on a gluten diet for 6 weeks longer than needed no matter the costs. I figure that if the results come back positive it will be money very well spent. He has been on gluten his whole life, and had 2 weeks off a month ago. At the time of the endoscopy he will be on gluten for 4 1/2 weeks. Is this enough to show up celiac disease?

I did know that they can't legally refuse but it wasn't worth arguing over. The specialist looked through the tests today and he is vitamin d deficient, but other than that all is okay...he is just very small and thin. Regardless he is doing a biopsy in 6 weeks though I was told there is only 5% chance he is Celiac with negative blood results. I don't know if he is looking for other things as well. I'm looking forward to getting some definitive answers. Thanks everyone for you help.

Thanks Debbie, I haven't got a copy of the blood tests, my ped wouldn't hand them over but I will have the specialist look at them for me on tuesday. My son has been back on gluten for 2 weeks now. His behaviour has been terrible, he is wetting the bed every night (wasn't at all gluten-free), he has had night terrors, he is not eating, has diarrhea, and has lost 1kg which is a bit when you are only 12kg. I am so nervous and anxious and excited about having him checked out on tuesday. I hope we get some answers soon.

Thanks for the response. His behaviour over the past few days has been atrocious and I am starting to remember how manic he was as a toddler and how we used to laugh and say he looked like a starving ethiopian and all sorts of other things that make it all just fit. At a birthday party the other day I noticed my friends son who is not yet two was his height... it's pretty scary. My stupid paediatrician has cast the blame on me saying we are too healthy (not even true.. I love cakes and butter and cheese etc) because I wasn't keen on the idea of feeding him McDonalds to fatten him up. More motivated, today I called the Coeliac Society (here in Australia) and am being referred to a specialist next week. I am also going to try and have swabs done to see if he has the gene. Regardless of what comes up I will put him back on a gluten-free diet. Its great to hear other stories and that it's not always so clear cut. Thanks again for your help. I now no longer feel like I am overreacting!

Thanks for giving the time to respond and give me such great advice. I cried when the doctor said he wasn't celiac because it all seemed to fit so well and my son seemed so much better for it. I will try him on the diet again for at least 3 months and see how he goes... regardless of his diagnosis. I think I already know that he will be better for it and may even grow a bit which would be great seeing his younger sister has already outgrown him. Incase anyone else is in a similar situation and reading this, I will continue this thread to let you know how he is going. Thanks again.

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Celiac.com was founded in 1995 by Scott Adams, author of Cereal Killers, founder and publisher of Journal of Gluten Sensitivity, and founder of The Gluten-Free Mall, who had a single goal for the site: To help as many people as possible with celiac disease get diagnosed and living a happy, healthy gluten-free life!